Afflicted with RSD/CRPS: Recent Comments

Comment on Spreading Awareness

2009-11-01T20:56:37Z

Hi Christine! I came across your website today and loved it! I too have RSD. Was diagnosed in October '07 after a not so gracefull slip off my front porch. I ended up breaking both of my 3rd metatarcil's in my feet. The RSD started in my left foot and after the 1st year it spread to both legs, basically everywhere from the bellybutton down... I have the SCS now and it helps out a little bit..
Anyways, I live in Oklahoma too... Its nice to know that Im not alone in this fight... That there is someone else out there like me.. (unfortunately) Hang in there!!!
Christy

Comment on Settlements Reached and Lawsuits Won

2009-10-27T16:15:56Z

First, thanks to Christine for this site and the information it contains. I am located in Jackson, MS and have had RSD (type 1) for 5 months after a rotator cuff surgery. My story is very similar to most on here in respect to pain and other things most have covered. I've been very fortunate to have been professionally doctored at a early stage of this demon and haven't lost faith that remission is possible. I thank God I haven't seen some of the suffering many of you have and I pray for your relief.

I'm amazed at the vultures that await an already victim of this demon from Hell with promises of cures, pain relief, big settlements, herbal secrets that the doctors don't want you to know about and more. It all brings new meaning to the old cliché, "take a nickel off a dead man's eye". They're worse, because they're not even waiting for you to die to get it. Just be aware of such things that sound too good to be true, commonly they are. Have you noticed all the research sites out there and how they need money to do this research on RSD. You got it, they want the poor souls who are stricken with this monster to donate. Where's the Red Cross, the Salvation Army, The March of Dimes, Farm Aid, somebody but the miserable souls that suffer every hour of every day that have this. Even the health care workers, I would venture to say 75% have never heard of the condition unless they are a PhD. There needs to be a world outcry, "Hey World, there's a demon sent from the pits of Hell on us and its name is Reflex Sympathetic Dystrophy (RSD)". Sooner or later the right person will get this, then, and only then, will it become a major concern to find a cure for it. Till then prayers for one another, good and bad experiences with physicians, attorneys, medications and such passed along to one another are better than fighting this battle alone. Medications have no boundaries, but physicians (distance) and state laws may effect attorney selections and/or outcomes. I live in Jackson, MS welcome any contact. Be aware I'm medically ignorant, relatively new to RSD, have no attorney yet, so I will not comment on my condition in depth. Anyone in my area seeking services for RSD, I will recommend NewSouth NeuroSpine in Flowood, MS if you are in the area. They won't have the deer-in-the-headlights look when you mention RSD, I promise that much.

My Prayers be with You,
Larry T.

Comment on Treatments

2009-09-03T03:22:21Z

I hope you're doing well will all your pain management treatments.

Comment on Comic Pain Relief 2007

2009-05-30T20:22:55Z

Comic Pain Relief- VA, 2009
Saturday, Sep 12 7:00p to 10:00p
at Center for the Arts: Harris Theater, Fairfax, VA
AND
Comic Pain Relief- AZ, 2009
Saturday, Oct 24 7:00p to 10:00p
at Tempe Center for the Arts, Tempe, AZ

EVENT INFORMATION (FOR BOTH)
Price: $10-20
Phone: (804) 526-1912/ (480)502-5818
Age Suitability: Teens and up

Join us for a night of laughs at the Hippest Hypnosis Show! The 3rd annual COMIC PAIN RELIEF, is hosted by the Power of Pain Foundation. The MC is Marby Ingle. Headlining the event is the one and only Tom Deluca, who will choose audience members to be hypnotized on stage. For more information on go to www.powerofpain.org. Donations are 100% tax deductible, the POPF is a 501-C-3 charity. 804-526-1912. Check out Tom Deluca at www.tomdeluca.com

Comment on 2009 Achilles Walk for Hope & Possibility

2009-05-28T02:42:45Z

I would like to join the Achilles walk and obtain donations. Please contact me at 949.784-.9394. I have had RSD since March 2006 and installed the spinal cord stimulator lat November. My attitude is positive, however, I still have my pain and down days. I would love to be around people like me because I feel alone and no one understands. I have great days and then my pain can get to a ten in a heart beat. I am requesting my vendors for donations so we can research this crazy disease and would love to obtain more information regarding it. I'm happy I still have my right leg after three Achilles tendon repair, but dissatisfied I incurred RSD/CRSP. It is a long story, I thought I started having seizures because I would shake and sweat in the middle of the night. I will share more later....I just do not want to re-hash everything right now and I feel it is my duty to walk next month and be with my kind. Therefore, please contact me..my girlfriend who has supported me through this whole ordeal will be walking with me and that makes me the happiest person on earth. We have been through the ringer....I'm from LOng Beach, Ca and she is from Phoenix, AX. She is the best, also known as my ROCK. I love Amy.

Comment on Sex and RSD/CRPS

2009-05-11T02:21:35Z

I can totally relate to your post. I feel bad for poor hubby because he feels like he did something to cause the pain.

Comment on Caregivers and websites for Caregivers

2009-05-09T17:13:51Z

I have started a blog for tips and tricks of caregiving. I am my Mother's full-time caregiver. She suffers from RSD. I have been searching for a good caregiver's website/blog myself and I am glad I am not the only one! Thank you!

Comment on Sex and RSD/CRPS

2009-05-07T20:33:01Z

Sex and RSD...
I have been with my husband for 13 years this Nov.I have had RSD for 3 years. Things have definatly changed.I struggle to balance limiting my pain and having a 'normal' relationship. I wish there was an easy answer or fix too this issue. As it is now I feel that I am forcing myself and faking any enjoyment. This is sad, I feel like I am lying to my husband. He really deserves better. It would hurt him so much to know how painful sex is for me. I hope he never finds out. I limit the number of times per week, and I try to stay in positions that are the least painful. Other than that I don't know what to do.
Thanks,
Elle

Comment on Spreading Awareness

2009-03-17T17:26:12Z

i have had rsd since 01 i live in oklahoma i am trying to start a support and awareness group here i understand when you say you do not always feel like checking your mail or even working on it but i am trying to do my best i will keep praying for you and all of us who suffer from this horrible disease i havc contacted my state reps but i am nt getting any response hopefully they will just talk to me so we can get a bill passed here like other states are doing well gotta go good luck and remember with him we can put out the fire within

Comment on Checking in...

2009-03-03T04:37:04Z

Christine I love visiting your site. You are a shining example to all who deal with chronic pain on a daily basis. It's too easy to become overwhelmed by what we have to deal with but reading your posts gives us hope. I believe that doing things for ourselves empowers us. You are not only helping yourself but passing on what helps you for others. Thank you so much.
jeisea